Starting over

It’s been a fluid, eventful and revealing two months. To state it has been excellent, however, would be a gross miscalculation. Avonex, the disease-modifying treatment I hoped would change into my new best friend, didn’t turn out to be as easy a relationship as I had expected.

On any given day, people living with multiple sclerosis are confronted with only one certainty: the notion that MS is an unpredictable illness. With 4 different types of multiple sclerosis and over 50 symptoms associated with MS, putting faith in such a fickle disease process involves the ability to make snap decisions to get through the day.

Just like it takes guts to have children or leave a dysfunctional relationship, making medical decisions when you’re living with a neurodegenerative illness requires insight in your own strength and weaknesses.

But, don’t be afraid of adding a few mistakes to your imperfections. We all fear failure, especially when you live by a baseline that comprises fatigue, chronic pain, and other symptoms. Anything that goes above and beyond that line directly puts you in the sphere of trying out Charles Darwin’s principle of survival of the fittest.

My view?

If you make mistakes, you learn how not to repeat those cringe-worthy moments. But, if you see positive results, you learn how to harness your strength until another big issue requires a snap decision.

Either way, you master how to survive in a world that keeps on spinning harder and faster than ever before.

Whatever happens, you win.

There are no wrong decisions, only poorly developed choices?

When I started Avonex treatment eleven weeks ago, I was desperate to prove that the periods of increasing stabbing facial and eye pain would eventually reduce in time and space. In the back of my mind, I perhaps similarly wanted to prove that trigeminal neuralgia’s awful nickname would never apply to me, just because I know that no amount of pain could ever tackle me.

Changing new disease-modifying therapies (DMT) will impact the body on account of being high-tech medicines, which are produced by biotechnological means, or contain new drugs with significant new therapeutic uses. I didn’t care what it was called as long as I could drop daily injections in favour of something less invasive.

Weekly Avonex injections taught me is that 13.5 years after first being on interferon therapy, it still causes severe side effects. After each dose, I deteriorated, from tumbling headfirst into an increasingly low mood, increased neuropathic facial pain, tingling and numbness and worrying skin and harsh allergic reactions. There was no other way than to withdraw treatment out of fear of experiencing anaphylactic shocks.

Because a chronic illness has a significant impact on your lifestyle, emotional health, self-esteem, and social relationships, at crossroads like these you want to be confident you’re going in the right direction because no treatment is worth such high risks.

After all, there was life before MS, and I want there to be plenty of living after adjusting to a new therapy. It’ll take time to adjust to new normals, something I am willing to spend blood, sweat, and tears on as long as side effects do not hamper that course. I packed a lot of living in the past 13.5 years, so I’ve had time to let MS teach me what mattered and what didn’t, and this litmus test was not worth the effort.

Self-determination

Perhaps one of the best lessons MS taught me over the span of many years, was to get over negativity faster than I would have in the past. When you find yourself stuck in thought patterns that will never get you anywhere, it is time to take a pragmatic look at yourself and come up with new tactics to get you over that bridge you need to cross.

The MS community may only consist of 2.5 million people globally and 9000 in Ireland, yet I learn from the many who came before me, and of those who were recently diagnosed. Due to the nature of a neurodegenerative illness, together, we are on a journey that will see us take necessary detours and deliberate steps on the breaks to avoid pitfalls of any kind.

Sacrificing your life for a chronic illness never comes easily. You learn to compensate and decide how reliable your judgment is based on what you can put in physically, mentally and emotionally. Quite often, what lies within you is mentally infinitely stronger than anyone might realise – even yourself – because, until that point in time, you have been at your worst already.

Nobody ever said it was wrong to be this physically ill. Sadly, it might turn disagreeable if you let others, outside events and yourself annoy you about the way you’re living your life.

Think of it in this way, the brain is a 3 pounds (1.5kg) mighty tool that can produce odd physical sensations when there are none, take away your eyesight and give it back to you a week later, and put you in a wheelchair for a long time to come.

On the other hand, your brain helps you to believe in yourself again. You can find happiness and fulfillment in newly discovered experiences, and it enables you to rebuild your life out of necessity. In short, the brain uses itself to heal itself. If you find the courage to say, “Screw you, MS, you will not succeed!” you are one mighty tough cookie!

Adaptation = help

Adjusting to the immediate and long-term implications of a neurodegenerative diagnosis is not a straightforward task. What works one day, might be a failure the next. Or, you think you know better than any doctor but run into a brick wall of fear when you feel an entirely new symptom rock your world.

I still see myself sitting in my neurologist’s office on the day of my diagnosis. She said, “You will have to educate people about MS,” and “From now on, change your lifestyle.” Being slightly flabbergasted doesn’t even describe how I felt. I moved to Ireland 2.5 years prior, and now I had to change my life… again?!

Still, I accepted the challenge. You cannot but take on a test like this.

Adaptation is a job best done with the help of loved ones, friends and otherworldly creatures since they take part in what is happening in your life. Sometimes, however, people just grow apart because of discussions or fights, and we all know, loved and/or miss friendships that ended this way.

However, I absolutely get it, it’s not always easy on others either, but sadly, a ‘chronic’ illness literally means a ‘forever-illness’. You don’t tell people with cancer to stop wallowing in self-pity just like you can’t rip your neurodegenerative illness out of your body for a day to please others.

All the above doesn’t take away from the view they might have of your illness. What people don’t know, though, is that before they label you, you have done your own name-calling already, as you’re not exactly happy with your daily performance either.

Some of the worst pitfalls remain those laid by others because they don’t understand the level of determination it requires to get up in the morning with a smile on your face, while you feel like you just ran a marathon in high heels, and backward, mired in chronic pain while others were sleeping.

We defend or limit our experiences by attracting what we have put into our life already. I can say with fair certainty that my mojo is out of whack, something I’m not always willing to show, or admit. Thirteen-plus years got me to this point. Nevertheless, it’s Avonex out, and Copaxone in with more adaptation and determination than before.

It’s time to button up, straighten up, put on big girl pants and kick out the thinking of what Avonex did or didn’t do.

The time has arrived to add some sass back into my life, it can just as well be right now.

Absolutely amazing post that I can relate to all too well! I had tried so many different medications and failed with SO many, but now I am taking Gilenya. Gilenya “seems” to be working, but I am ALWAYS in pain! I wish you nothing but wellness and comfort!

Hopefully your pain will soon disappear Alyssa. It’s not fun having to get through the day like this. The good thing is that there is now a plethora of new MS medication out there in case Gilenya continues to be a pain in the proverbial butt. Hang in there, and thank again!

Thank you very much Amanda! Side effects are there but definitely not the severity of Avonex.

When I was diagnosed, I started Rebif straightaway. I was told that interferon side effects would only last about 3 months, but 1.5 years later, I was still missing a lot of work because of it. Went to daily Copaxone, and never had any side effects. At all. Knowing what I know now, I shouldn’t have switched to Avonex, but now I know that interferon and I are never going to be best friends. You live and you learn, right? :)

Brilliant blog post! I really love when you say, ‘some of the worst pitfalls remain those laid by others because they don’t understand the level of determination it requires to get up in the morning with a smile on your face, while you feel like you just ran a marathon in high heels, and backwards, mired in chronic pain while others were sleeping.’ – it resonated so much! All the best to you and hoping that the Copaxone works for you 🙂

I’m sorry you had to go through this. I know what its like to do an injection once a week vs several times a week. Currently switched to Tecfidera (one pill twice a day) – much better! Assume you’ve already tried this. Just know there are many others who feel your pain.

New MS medication is always trial and error, isn’t it? I can imagine pills over injections are much easier. My neuro wants me to try out the triweekly Copaxone so I’ll see how I get on with it. Definitely not as many side effects as Avonex!

Book Review – Trevis Gleason’s Chef Interrupted

The book is as engaging as Trevis is in real life, and a must-read for anyone with MS. Yes, life was interrupted by his diagnosis, but Trevis manages to squeeze every bit of life out of the good as well as the bad days. Laced with recipes, daily Irish events about dogs and how to life to the fullest, I can only recommend this book to anyone who's looking for some inspiration and motivation to keep going. #TrevisGleason #ChefInterrupted #multiplesclerosis #Ireland

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Last updated: June 08, 2018

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